Saturday, January 31, 2009


Thank you for all the wonderful birthday wishes and encouragement. It has been a good day, full of wonderful phone calls, and time with friends.

Hope is not improving yet. She continues to vomitt frequently, has not kept anything down that we can tell, and is having quite a few seizures. She has had brief eye open moments today, but nothing that you could call 'awake'. She hasn't had a wet diaper since the first one this morning.

We'll see what tommorrow brings.

Happy Birthday to me

It's my birthday, so I got to sleep in this morning. Here is my 'morning face' with my two happy kids who were able to sit with me while I opened presents (Hope is still sick). I've had a fun morning on the phone, drinking my starbucks that Alex was kind enough to get for me.

Hope is having a hard morning. Vomitting every 15 minutes this morning, and now settled down to every 30-40 minutes. Unfortunately, her meds are not staying down, and she's puking up brown stuff which is looking like old blood. She's pretty sick. If she starts puking up bright red blood, we'll take her in to ER. She hasn't opened her eyes since yesterday around 6pm. It's probably good that she's 'resting'. Hope she gets better soon.

Friday, January 30, 2009

Sick baby

Hope is sick today. She's been vomitting since 3pm, with quite a few seizures and some horrible stomach heaving. She's pretty wiped out right now, hopefully she gets a good rest.

Thursday, January 29, 2009

New Toy

Ashley and Hope saw the Physiotherapist and Occupational Therapist today. They past inspection of course, and then we got to play with a new toy for Ashley.

It's a switch toy. You can see it on her tray in the photo, linked to the tape player on the piano. Whenever her hand rests on the yellow pad (switch), it vibrates to let her know she is touching something and then the music comes on.

It also has a little microphone attached to it. Everytime Ashley sets off the music, Brodie runs over to her and grabs the mic and starts singing. Kind of annoying (the radio has a chipmunk setting, so Brodie sings into the mic and sounds like a chipmunk), but mostly cute! This toy is on loan to us, so we'll look into finding one if Ashley likes it.
Have a great day.

Wednesday, January 28, 2009

Sitting tall...

Here's Ashley sitting tall at the table with the rest of us in the morning. She is so full of smiles, what a joy.

Finally it warmed up a bit. Alex, Brodie and I enjoyed the warm weather by going out into the hot-tub. Brodie had fun with all his bath toys. Next time we'll bring Ashley in and see how she likes it.

Hope is still crying. She starts around 1:30pm with clusters of seizures which leave her sobbing, then more spasms which get her crying, and then the intensity increases until she is full out crying and completely inconsolable. The last couple days, she has calmed down by 6pm, but doesn't fall asleep till about 8pm. At least she's still getting sleep at night. Although we're not too sure how much sleep, because we keep finding her in the midst of full body tremors, twitches and jerks when we go to get her up in the morning.

Friday, January 23, 2009


Ashley has been having big smiles all morning. While Ashley was in the bean bag, I placed Hope in her arms, and then 'Wow', the smiles were constant. So cute.

Thursday, January 22, 2009

Nice day

Brodie is off to school with the gingerbread baby puppet. He brought it home from school, along with the book that each kindergarten kid writes in to say what the gingerbread baby did at their house. He wrote in the book and drew a picture of him playing hockey with the puppet.

We're having a nice day so far. My friend, Michelle came over for coffee with her little guy, Ethan. Brodie and Ethan played hard, and we cuddled the girls, which made a very nice morning.

So far, no change for Hope, she still cries every day starting around 3pm and ending by 9pm. Alex thinks we'll get used to it and won't even notice the crying soon. People will come over and say, "Aren't you going to do anything about your crying baby?", and we'll be surprised, "Oh, she's crying? I stopped noticing that about a month ago!".

It will take nine days before the Gabapentin is up to the full dose, and then we'll wait to see if there is any change for Hope. I'm not looking for any changes before that.

Tuesday, January 20, 2009

Back to normal...

The girls are back home after their fun-time away with our respite friends. Ashley came in the door with smiles and the cutest pigtails, all braided with matching hair 'bobs'. Hope came in with seizures and a look on her face that said, 'just wait for it...'. Hope actually settled quickly this evening and went to sleep, but reports of frequent crying did come home with her.

Brodie quickly updated the girls on the events over the weekend, and helped them by injecting "ooohs and ahhhs" in his 'little girl' voice, at all the right moments.

It was great to have a break. Now that Hope is back home, it looks like we're going to try some Gabapentin, as suggested by Palliative Care and Neurology. It's a medication for 'neurological pain', and it did help Ashley a LOT. We'll see what it does for Hope.

Saturday, January 17, 2009

No rest...

No rest for us. Brodie was up puking on and off till about 0530. I'm thinking that it's a good thing the girls are not here right now.

Friday, January 16, 2009

Bye Bye...

This is Hope all wrapped up tight. We try to wrap her arms at her side to stop the seizures from jerking her with so much force. It sometimes calms her down.

We're having a free weekend. As of 6pm today, both girls went for a 'sleep-over' and won't be back till Tuesday. It's a respite weekend for us, and the timing is perfect. Hope's crying has become so overwhelming that I'm unable to make decisions lately (too depressed). It will be good to not worry about how to make her comfortable for a few days. The girls go to a family here in the city who take excellent care of them. They get cuddles and fun hair do's. The husband and wife are both nurses, which puts us at ease in regards to their care.

Alex returned today and we enjoyed some pizza and games with Brodie. Brodie might go for a 'sleep-over' tommorrow night, and leave us with an empty house. Imagine that!?!

The Palliative Care Team was at our house today to discuss options for Hope, and made me feel so much better. So, nice to have someone advocating for us and searching out answers. Hope's crying is definitely related to lack of sleep and seizures. She can't sleep because the seizures get worse when she is sleepy, and then she cries. Such sorrowful sobbing, and stronger cries when the seizures grab her body. The seizures get stronger as the evening progresses and she cries harder. She eventually falls asleep for the night and I think this is why the mornings are good, because she is rested.

As I'm typing this, Brodie has come to me and states that he is going to throw up! Better go...

Wednesday, January 14, 2009

No change

No changes around here. Just a lot of crying by Hope, a lot of smiling by Ashley and a lot of playing by Brodie. The week is kind of dull with Alex gone, but is manageable. Brodie didn't go to school today. Apparently it was colder today (could have fooled me - every day is cold) and the buses didn't run...absurd if you ask me. Why cancel the buses and not cancel school?!?

Monday, January 12, 2009

Monday morning

It's 7am and Hope is still awake. I chose not to stay awake with her, so I actually had a good sleep. I'm guessing that she was awake all night, because I could hear her little noises every now and then, but no crying...Yeah for me!

Sunday, January 11, 2009

Sunday night

It's Sunday night around 10:30 p.m. and Hope is awake and seizing, probably getting ready to start crying. She didn't sleep at all last night, so she went to sleep at 1100 this morning and woke up an hour ago, and has been having little seizures ever since. Not too sure if she'll sleep tonight.

Alex left for Saskatchewan today, and will come back on Friday. So, we're missing him today.

Brodie had an eye appointment on Friday and recieved an excellent report. His vision in his right eye has improved by three lines. Before we started, he could read the big 'E' at the top of the chart with a strong lense in front of that eye, and now he has moved three lines down, to read at the 20/70 level on the chart (still with glasses of course). Very encouraging.

On Thursday, we tried to bring the girls to Brodie's class to make gingerbread cookies. I won't do that again. Hope started crying as soon as we got there, it was a disaster. So, I took the girls home and decided that we'll just stay home until we can figure out how to get Hope happy again.

All this crying really 'stretches' a person. Prayers please!!!

Wednesday, January 7, 2009


Here we are having playtime this morning. Brodie did a good job of showing the girls how to play school. Tommorrow will be fun. Brodie's class needs volunteers to help make gingerbread cookies. So, I'm going and the girl's are coming with me! Should be interesting.

Hope still cries every day, but can be consoled after 30 minutes of cuddling. Unfortunately, if I put her down, she starts crying right away and it takes me another 30 minutes to get her to stop. So, I'm not sure if this is better. If she is to be calm, then I have to hold her for 8 hours. Although the crying only started at 5pm this evening, instead of 3pm.

Brodie is so excited that his sisters are going to see his classroom and friends. If Hope starts crying, we'll be leaving early, but at least we tried.

Monday, January 5, 2009

The same...

Hope got 'plopped' in Ashley's chair on our way out the door to church yesterday. She looks so cute in there, I just had to take a photo. You probably think I have the camera attached to my hip by now. I may just do that...hmmm....maybe a fanny pak!

Hope still cries in the evening, but she is oh, so cute in the morning. I just can't get enough of her cuteness when she's calm. Ashley's doing great and Brodie is doing fantastic with his patch and glasses. We'll see the optomitrist this Friday for an update.

Have a great day.

Saturday, January 3, 2009


Brodie likes it when I help Ashley play lego with him. When I got tired of the lego (which happens pretty quick), I left Ashley on the floor to 'play' with him. I always find it amazing that he includes her in his play. Today he took her hand to move the lego cars around, then got really excited when her spontaneous (not necessarily purposeful), hand movement caused a lego car to roll away. He kept encouraging her to do it again, and she just lay there smiling up at the air.

Hope had a good day. A little crying in the late afternoon, which actually settled with some cuddles later on, then some more crying and eventually to sleep.
Ashley says, "Thank you Grandma and Grandpa Allen, for the cozy outfit, it fits perfect".

Thursday, January 1, 2009

Happy New Year!

Happy New Year everyone. We're home after a fun sleep over at our friends house. We took all the kids, let them play, put them to sleep and then us adults played games and toasted the New Year. It actually went well.

Hope woke up yesterday around 3pm and started crying right away. She kept the crying up till about 9pm and then blessed us by going to sleep. Right now I'm holding her and she's actually not crying yet!!! It's almost 4pm, so I imagine the crying will start soon, but I'll enjoy her till then. Brodie is going tobagganing in a few minutes (with Alex) and I get to stay home with the girls. I'll try to enjoy the warm, peaceful house instead of resenting the fact that we don't manage to do fun stuff together as a family.

Hope and Ashley both seem to be doing well with their colds. In fact, it's hard to tell if they are still sick today. Both have smiles and Hope has some cute little coo's. Yeah!

As I type this, I'm holding Hope. I stop typing to give her the bottle every few minutes, and over the last 30 minutes she's managed to drink 1/2 an ounce. Not bad little Hopey!